Monday, February 27, 2012

CWD Conference

It was fantastic, that's all I can say. The lectures, the learning, the camaraderie, the communion. Yes, the Children with Diabetes Technology Conference that Grace and I attended this past weekend was all that. Part of the whole experience is being among so many people and children with Type 1. It does something to a person, to feel not alone in dealing with this disease. It reaffirms the courage that it takes to live every day, and seeing all my fellow friends with Type 1 as adults, does a heart good. There goes my Grace, as an adult, attending CWD on her own, as an adult. I see it in my mind.

I heard from so many good, good people. Dr. Henry Anhalt, the Chief Medical Officer and Medical Director of the Artificial Pancreas Program for Animas Corporation was there. And he was honest, and funny and was devoted to this project. And it made my heart swell listening to explain how this works, and why and what it might look like. And hearing that the AP results in fewer hypos, particularly those leading to hospitalizations or death and it improves glycemic control without compromising safety. And no, there is no year he projects it will actually be done, or be available for us, but darn it, it's a lot closer than the elusive cure we all hope for. One of the great quotes he stated was from Dr. Eliot Joslin -

The diabetic who knows the most, lives the longest.
And darn it if I'm not gonna be the mom who knows the most, who passes it along, who furthers my daughter's knowledge, cause we are gonna be here a long, long time. You can bet on that. 

And as I sat there, I thought, 'We are talking about an artificial organ for my child! For all the PWDs who sit next to me. For all the Type 1s.' This is what hope looks like. And I think how far we have come in diabetes care, which was exhibited by this slide from Dr. Anhalt.

It's amazing how far insulin pumps have come!
And I am thrilled Grace doesn't have a backpack insulin pump!

Rick Philbin, who worked for Animas for a long time, is Type 1, is on the Board of the Diabetes, Exercise and Sports Association (DESA) was like a god when it came to explaining exercise with Type 1. Rick, could you come home with me and help? Thanks. He was telling me what I needed to do! I loved it, and took notes like a madwoman.  

Look at the physical activity adjustments! I figured dance is close to gymnastics, and Grace weighs about 75 lbs, so we split the difference between 50 lbs and 100 lbs. Do you hear the angels singing? I do! he told me how much grams of carb to snack on to prevent lows. Holla to Rick!

And might I add, he knows about meal bolus adjustments too! I took pictures as I was so excited, I couldn't even take notes. There are meal bolus adjustments I can make for low, moderate and high intensity cardio (can you say when Grace dances like she got shot out of a cannon???) I adore this. I adore information that can help Grace do what she likes to do, and not go low. THIS is what makes CWD and the presenters absolutely rock.

And of course, Gary Scheiner presented about preventing hypoglycemia. He gave Grace a giant hug when he saw her and proclaimed that she grew a couple inches, which she has. He gave wonderful information about preventing a rebound high from a low and stated that the goal should be less than 10% of BG readings below target at each time of the day. He constantly stated that we should be looking for BGs to return to within range 3 to 4 hours after a meal, not 2 hours. And he gave a good list of some uncommon ways to treat lows, with some high glycemic index foods:
dry cereal
graham crackers
vanilla wafers
jelly beans

And of course, dextrose rules! All the good dextrose candy helps bring up a low - SweetTarts, Smarties, Spree, Airheads, Nerds and Runts. He reminded us all that it's hard not to overtreat and to abide by the 15 minute rule, as hard as it is. That when we see a low BG rising, to let is rise and continue to watch it. That if the BG is rising, then a person should be fine.

Tom Karlya closed the conference on Sunday morning with a great talk to all of us, mothers, fathers, children, PWDs. It was profound, how all it takes to do something big in life, is just one step. Just. One. Step. Whether is starting something like JDRF, DRI, CWD, it all takes one person, with one vision, making just one step. And he had us captured, with humor and insight and belief, that we ALL make a difference in each other's lives, just by being here, in communion with others who are going through the same thing. And he left us with a message that resonated with me.

Amen to that, and Amen to CWD.

Coming up this week, more CWD blog posts
Grace and the children's group
Tom Karlya's video that had us crying
Dinner out with the CWD gang
Hanging with Grace's DBFF
All too much for this one post.


Leighann of D-Mom Blog said...

I LOVE that quote from Joslin.

Thank you so much for this recap. I look forward to reading the rest of your posts.

Something I struggle with is when Q has a meal right before ice skating, etc. I try to remember to back off on her bolus (usually subtracting 15 carbs) rather than handing her a snack in the car on the way. But I'll have to read up on the method you described.

And I'm totally moving to Philly so we can hang out with so many awesome d-friends!

k2 said...

Awesome post, awesome time!

sheila thomas said...

Thanks so much for posting the info from the conference, had to deal with some really bad lows this week from basketball, wish we could have gone and heard it all but this helps! looking forward to reading your other conference posts.

shannon said...

thanks for the info and for the photos of the guidelines, which i have saved for my own future reference!